UK High Court rejects challenge to assisted suicide law.

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

Great news: The UK High Court decided to dismiss a request by Noel Conway to hear his challenge of the assisted suicide law.

The High Court decided that it is the role of parliament to make law and not the role of the Court. The UK Supreme Court made a similar ruling in the Nicklinson case, when it upheld the assisted suicide law in June 2014. In the Nicklinson decision the court asked parliament to debate assisted suicide.

One of the deciding factors in the decision was that the British parliament overwhelming rejected an assisted suicide bill by 330 to 118 in June 2015. Parliament debated assisted suicide and it decided to uphold the assisted suicide law.

Disability activists, in the UK, remain strongly opposed to assisted suicide.

Baroness Jane Campbell - Assisted suicide could lure me to the grave.
Kevin Fitzpatrick - Debating assisted suicide - Contempt for life with disability surrounds us.

The British Medical Association have debated assisted suicide on several occasions and have rejected the push to go neutral on assisted suicide.

The Care Not Killing Alliance stated that:

This was a troubling case that sought to usurp the democratic will of Parliament. 

"The current laws on assisted suicide and euthanasia are simple and clear. They exist to protect those who are sick, elderly, depressed, or disabled from feeling obliged to end their lives."

The UK Court is acting responsibly by limiting its role to interpreting law, but not making law. Conway is stating that he will appeal the decision.

Honouring Kevin Fitzpatrick (OBE).

Dr Kevin Fitzpatrick

By Alex Schadenberg
International Chair, Euthanasia Prevention Coalition

Dr Kevin Fitzpatrick (OBE) passed away two weeks ago but tomorrow is his funeral.

For me, Kevin was a trusted colleague and friend who I will always miss. I learned a lot from Kevin and I will carry those lessons with me forever.

Kevin accepted many leadership roles and he was an example of what can be done when people work together. Kevin was the director of EPC - International, the director of Hope Ireland and the past director of EPC - Europe.

Spokesperson for
Not Dead Yet UK

Kevin was also a key leader with Not Dead Yet - UK and acted as their spokesperson for several of their successful campaigns.

Kevin's professional background gave his approach to the debate on how to care for and support people with terminal and incurable illnesses and disabilities a particularly well-rounded quality. From disability (Disability Wales; Disability Rights Commission; Inclusion21; Not Dead Yet UK) to adoption (the Welsh Government's Adoption Expert Advisory Group; St David's Children's Society), not to mention five years with the Welsh Ambulance Trust, Kevin's outlook was firmly rooted in seeking answers to a single question: 'how can we as a society work to support and uphold the value of every person around us?' This was his life's work, with a particular focus on the most vulnerable and marginalised. (borrowed from the Care Not Killing Alliance)

Kevin was a great communicator. Kevin wrote many articles, he did many debates, he was interviewed on countless occasions and he provided excellent conference speeches. Here are links to his recent articles:

• Judgement day in Supreme Court of Canada decision - Disability discrimination to death. (July 31, 2015).
• Opposition to euthanasia and assisted suicide based on evidence of disability discrimination. (July 2, 2015).
• Belgium euthanasia leads to a decline of society. (June 26, 2015).
• Assisted suicide for disabled people - Democracy in Britain? (June 23, 2015).
• Let's have an open, honest and balanced conversation on assisted suicide in Ireland. (May 5, 2015).
• Level headed assisted suicide debate based on real evidence not misplaced emotion. (May 4, 2015).
• Deep sedation: France is in danger of buying a deadly illusion. (March 17, 2015).
• Conversation with Terry Pratchett. (March 13, 2015).
• Canadian Supreme Court condemns disabled people to death. (February 20, 2015).
• Assisted suicide campaigners' deaths prove we do not need to change assisted suicide laws. (January 7, 2015).

Hope Ireland conference

Kevin was a collaborator. Kevin knew that success came through activating many people who have different perspectives. Kevin knew that there were many reasons to oppose euthanasia and assisted suicide. He was most comfortable speaking from his personal experience with disability, but he was also incredibly effective at reaching out to multiple political points of view.

Kevin was a leader. Kevin knew the direction that we needed to go and he shared his wisdom with everyone who he worked with. He had a way of listening to perspectives and carefully correcting false ideas. Several leaders have shared with me the way that Kevin would help them and advise them in their advocacy. He was a patient leader, even when he didn't agree.

Launching EPC Europe in Brussels

Kevin was a family man and my friend. My experience with Kevin was that he put the needs of his family, especially his wife Fabienne, before himself. He was proud of his children, Terry, Gerry and Sue. He was sick for sometime, but he shared with me his concern for his family and placed them ahead of himself.

There are so many people who experienced Kevin, as a gifted friend, in their lives. I for one, will always be thankful for the opportunity of having him in my life.

Judgement day in SCC Canada decision revisited – disability discrimination to death.

Dr Kevin Fitzpatrick

By Dr Kevin Fitzpatrick OBE, is the director of Hope Ireland.

February 6, 2015 was a disastrous day for Canadians with disabilities - not just for them - but for all disabled people everywhere, and all people made vulnerable by the fact that they are facing end-of-life decisions.

The Supreme Court of Canada (SCC) judgement writes euthanasia into law on the grounds of disability alone. That is archetypal disability discrimination – in this case, to death.

Disabled people must resist what is the biggest threat we have seen to our lives to date, written into a legal judgement. So must everyone else: this is about the kind of society we all want to live in.

Within the SCC judgment, there are deeply flawed assumptions about human life and living in general, and specifically about what it means to live with a disability. There are significant factual errors also.

Disabled people opposing the legalisation of euthanasia/assisted suicide have never doubted that some disabled people will reach a view that ‘they cannot go on like this’. But despair is not confined to those disabled people, or people who are gravely ill, or people who feel they have ‘lost everything’.

Why then single out disabled people as a ‘special group’ amongst all those who will consider taking their own lives at some point? Disabled people are not a ‘homogenous group’ – we reflect the whole cross-section of society (which is why it is wrong to speak of ‘the disabled’). So some disabled people will absorb and reflect the thinking of their time, of their communities, and simply accept that this very public, and very poor debate conducted in the media, must have some force. Others will reflect more seriously.

Most disabled people do not count their lives as ones of unmitigated or ‘irremediable’ suffering. Our despair comes, not from being disabled per se, but from the institutionalised discrimination we must battle on a daily basis, being excluded from living independently, bombarded on all sides with the idea that we are ‘less than fully-paid-up’ human beings, being forced into poverty, denied basic human rights. Such is the discrimination we face, based solely on the fact that we are disabled, and no more starkly than in having us ‘marked’ for euthanasia by the SCC decision in Canada.

There are terrible errors of fact in the SCC judgment too:

· The idea that anyone will be ‘forced’ to end their life prematurely - based only on a fear of becoming so incapacitated that they cannot end their own lives - is false. 

· Another myth is that even psychiatrists agree amongst themselves about what constitutes ‘capacity’. The idea that there is one assessment which will guarantee this person is ‘competent’ now – and will be so tomorrow and the next day, until the moment they die - is false. 

· Many people believe that their loved ones were left to die of starvation and thirst, ‘a most horrible death’. Neglect has meant many such deaths are real. But it is also true that when someone is actually dying, giving food and certain amounts of water, when their organs are failing, increases their final suffering from the human experience of dying. Good palliative care practice in such moments includes keeping the patient’s mouth hydrated with swabs. The proper titration of drugs eases pain. 

· So-called ‘advance directives’ are not helpful. Peer-reviewed research shows that people are more likely to express a wish to die post-operatively, and more likely to ask to die the more serious the operation. That ‘desire’ fades as the patient recovers. If a psychiatrist assesses someone post-operatively to have a clear and settled intention to die, they may be ‘right’. But if patients are assessed weeks or months later they often no longer wish to die. It would be too late for those who are already dead. Death removes all choices and the possibility of a change of mind.

But it is not only after major surgery that such thoughts run in patients’ minds: and yet it may not take so long to see things differently. 

Imagine a man having lived with a disability caused by trauma or disease, say for over forty years old, who has just been delivered a diagnosis of an incurable form of cancer. Is it not perfectly natural to be devastated? Is it not entirely understandable in such a moment to say ‘Ok, I’ve had enough now’ and to ask ‘What happens if I do not take the treatment?’

Is it also understandable that after the initial reaction the man remembers he will meet his daughter for dinner that evening and must consider how he will explain to her and his other children, his wife, his family, his friends that he will not even try to meet this last battle? Every suicide involves other people.

If the doctor reacts to the initial ‘I can’t go on’ with a shrug of the shoulders and says ‘It’s your choice. We have the means. It’s legal now.’ how will that help the terrible end-of-life decisions the man is now faced with?

If the doctor remains clear and gives information about the bodily processes which will take over, absent of treatment, and waits sympathetically, returns later to check the patient’s thought-processes, allows for shock and grief to pass – even the tiny bit of time necessary for some re-balancing in the man’s unbidden reactions - is this not a more compassionate response?

Evidence shows that the main reason people give for wanting to die is not to be a ‘burden on others’. It is hard to suffer; it can be harder to watch a loved one watching you suffer. That is a critical part of our human experience. Their sense of powerlessness, loss, grief, impending doom, their exhaustion, their very love, all play a part, mixed at times, worse one time than at another, confused and sometimes even unrecognised.

The SCC judgment also says:

The prohibition denies people…the right to make decisions concerning their bodily integrity and medical care…by leaving them to endure intolerable suffering, it impinges on their security of the person.

There is no definition of ‘intolerable suffering’. Certainly some people may hold to one decision as to another, but the lie in this court ruling, is that there is anything to be described as ‘bodily integrity’ or that it ever makes sense to say ‘It’s my body’ or any of the usual formulations of that idea. No-one can own their body – we can own a house or a coat or a car. The problem is that this looks like a meaningful sentence – it is actually nonsense. It is a corruption of the concept of ‘ownership’ which has come to be accepted without reflection. And yet on such nonsense are court rulings of such magnitude built.

So the real question always becomes – who is such a law for?

It is for the protection of doctors, family members, others who are willing to provide suicide assistance.

The majority of doctors do not want any part in ending the lives of their patients. The majority desire to ease suffering. So those who want to participate in taking the lives of other human beings must be forced to explain their motivations.

There are far too many nuances in human and family life to ever be clear who is influenced by their supposed loved ones to come to want die. But there are also those who feel they are acting genuinely from love and compassion. Is such a law for them too?

I hope that our first response to someone who says ‘I want to die’ is always to help him out of despair, verify and treat depression, succour him to a different perspective on his life, its value. I fear the hope is often in vain.

If someone with Spinal Muscular Atrophy[1] says ‘I despair of my life and my future’ why then is the (supposedly) humane response to put a ‘legitimising’ arm around her shoulder and say

‘Well, after all these years, you have done enough. We all understand why anybody in your situation, should want to die. We would, in your place. Look how it will ease your family’s pain and burden. So yes, absolutely, we will do everything we can to help you to commit suicide. We have a lethal dose of drugs waiting’?

What about her husband, her family, her friends, her job?

That reaction and it may indeed sometimes be (mistakenly) thought of as one of simple human compassion is based solely on discrimination towards disabled people as disabled people. The condescension in it is worst of all.

That’s where the dangers lie. As we keep saying, it is not the fact that individuals should ever reach a decision to die that is at stake here: it is the consequences of legalising such a reaction to the decision that matters.

The false belief that has taken root is that suicide is (still) bad but euthanasia/assisted suicide is good, especially for disabled people who ‘should want to die.’

[1] As Baroness Jane Campbell, the longest survivor in Britain with SMA, has pointed out, the proposed legislation puts her ‘in the waiting room’ so that one day when she is feeling low what would stop any doctor from responding to her request to die? (House of Lords debate, Hansard 17 July 2014 – I paraphrase only a little for the sake of brevity).

• Opposition to euthanasia and assisted suicide based on evidence of disability discrimination.
• Jane Campbell: Assisted suicide could lure me into the grave.
• SCC assisted suicide decision is irresponsible and dangerous.
• Opposing the Supreme Court of Canada assisted death decision.

European Court of Human Rights rejects assisted suicide case.

Alex Schadenberg

By Alex Schadenberg
International Chair - Euthanasia Prevention Coalition

Today, the European Court of Human Rights rejected a case to overturn Britain's assisted suicide law.

The case was brought to the Court of Human Rights in Strasburg by Jane Nicklinson, the widow of Tony Nicklinson, a man who had lived with locked-in syndrome and Paul Lamb who had become paralyzed in an accident.

In rejecting the case, the European Court of Human Rights stated that:

the UK Parliament was "best placed" to rule on such a sensitive issue.

Dr Kevin Fitzpatrick

On June 25, 2014; the UK Supreme Court also rejected an attempt by Nicklinson and Lamb to overturn the laws protecting people from assisted suicide. Not Dead Yet UK spokesperson, Kevin Fitzpatrick, responded to the UK Supreme Court decision by stating:

Euthanasia and assisted suicide are profoundly dangerous, irrespective of such hard cases, not least because they pose a very grave risk to thousands of disabled people who have been made vulnerable by cuts in health and social care services and welfare benefits, making some feel they would be better off dead and no longer a burden on their family and friends.

The British House of Commons will be debating a bill to legalize assisted suicide this fall.

Not Dead Yet UK recently sent a letter to Prime Minister David Cameron explaining why they oppose assisted suicide and organized a rally featuring an excellent speech by disability leader and actress Liz Carr.

Not Dead Yet - UK: Open letter to David Cameron

This letter was written by Not Dead Yet UK to British Prime Minister David Cameron.

Prime Minister David Cameron

Dear Prime Minister

We are hugely grateful for your stated personal opposition to legalising assisted suicide, especially in light of the forthcoming ‘Marris Bill’ (September 11, 2015) in the House of Commons. We are however deeply concerned about the intention to have a ‘free vote’ at that time. That such that a law might be passed with such consequences, especially for vulnerable and disabled people, on the strength of ‘individual conscience’, is very worrying indeed.

We imagine that you already know that no Disabled Person’s Organisation (DPO) has favoured a change in law to permit third party intervention in any individual’s end-of-life decisions. Not Dead Yet UK is the lead DPO speaking out in Britain, and e.g. in the US disabled colleagues have been clear in rejecting such laws, for reasons of their consequences. Legislators there have almost universally turned away from their intentions to legalise assisted suicide once they are fully informed of those consequences.

Through rigorous research, we have gathered a body of evidence that such laws are not only dangerous, leading to the deaths of disabled people, but they also fundamentally depend on the stated views of their ‘architects’ in other jurisdictions, that our disabled lives are ‘not worth living’. This is paradigmatic disability discrimination – fatal discrimination in this instance.

Certainly some disabled individuals, like some non-disabled people, do come to seriously consider dying early, but disabled people will sometimes reflect their communities, discussions in the public domain and other factors. While we respect their views, we are at pains to distinguish a very few individual voices, supported by a wealthy pro-assisted suicide lobby, from our collective view. The effect of any law is to cover every citizen. Extension of the law’s reach, once passed, is almost immediate to those supposedly never intended to be ‘beneficiaries’ of them.

We see the lack of universally available best palliative and social care, and critically the right kind of human support, as core to what leads many people to despair of their futures, however long or short they may be. When the only choice available to someone in despair is death, we count that as no choice at all. The rhetoric around choice an autonomy is just that – rhetoric. Choice is an illusion, and the proposed law places all the decision-making power in the hands of doctors anyway, removing it from patients.

Not Dead Yet assembled at 10 Downing St.

Pain we know and even Lord Falconer has now publicly admitted, is not the issue that leads most people to ask for an untimely death – feeling themselves ‘to be burden on others’ is the biggest driver (e.g. 61% in Washington State, US which has a law very similar to the ones proposed so far). We expect no great differences in the terms of the Marris Bill, unless it attempts to subvert our opposition by pretending there can be ‘safeguards’.

Additionally, Lord Falconer’s own self-styled ‘commission’ reported clearly that ‘assisted dying’ is ‘a compendium term’ for assisted suicide and voluntary euthanasia (Demos 2012, p39). So a vote for an assisted suicide Bill that mimics his, as we expect Marris’s will in essence, will be a vote for assisted suicide and voluntary euthanasia. We understand that the public at large do not understand this nuance but we hope it should not be lost on your parliamentary colleagues.

We must widen understanding of the dangers of legislating in the face of media insistence in exploiting ‘hard cases’ which generate natural waves of public sympathy. Those people who appear have our every empathy too, from our lived experience as disabled people. But, for example, Oregon is chosen as the paragon of such a law working well. when again we have a body of evidence to demonstrate the anomalies, the abject failures of so-called ‘safeguards’, and what occasionally surely amounts to cruelty in implementation: a depressed patient whose GP knew him well over many years and declared him not to be a suitable candidate for Oregon’s assisted suicide programme but who ‘doctor-shopped’ and found another doctor who knew him not at all – the patient was dead weeks later. Or the patient who had no private health insurance and who received by letter the news that the state would not fund his drugs for terminal cancer. He was informed by this same letter that he qualified for the assisted suicide programme. There are many more factors: no doctor is required to be present when the patient finally takes their final lethal dose (sometimes years later – so much for the six months to live prognosis). No investigation is permitted post-mortem, which begs the question, who could know if there was suggestion, coercion, or even murder.

Thankfully the proportion of doctors who say they would be willing to perform such acts remains very small. But that will increase dramatically should a law be passed – the act involved, providing suicide assistance will be legal – self-questioning will become redundant. The short step to people claiming they cannot do the final act themselves, challenging the by-then existing law to ‘grant them their rights’ too, will follow swiftly. Voluntary euthanasia will supplement what the courts already allow, non-voluntary euthanasia (typically, switching off life-support), and we will find involuntary euthanasia, the final peg, ‘helping’ people with Alzheimer’s Disease for example, to die will arrive soon after. We will have the full panoply of a Belgium in just a few years.

We are convinced that the law in Britain as it stands provides for those who are serious in their intent to die whilst protecting all those who become vulnerable when faced with such terrible end-of-life issues. The best protection against these developments is keeping the first steps illegal.

We seek further dialogue over these pressing matters, with yourself if at all possible, with your colleagues, officials, to hear our evidence-based concerns and how they are so integrally associated with this terrible desire to offer State sanction to assisted suicide.

Please accept our letter to you as another way to fulfil our aspiration to have an intelligent debate about assisted suicide/euthanasia in our country. This is about the kind of society we want to live in – disabled people more than any other group are under threat. Patient safety remains at the heart of good clinical governance in best medical practice. We too need to be safe.

On behalf of Not Dead Yet UK, we remain

Yours sincerely

Baroness Jane Campbell
Baroness Tanni Grey-Thompson
Liz Carr, Actress
Dr Kevin Fitzpatrick, OBE
Dr Phil Friend, OBE
Sian Vasey

Opposition to euthanasia and assisted suicide based on evidence of disability discrimination

Kevin Fitzpatrick

Dr Kevin Fitzpatrick is the director of Hope Ireland.

The inaccuracies and elisions in the Economist article: Doctors should be allowed to help the suffering and terminally ill to die when they choose came as a shock. I thought that the Economist held to finer standards of journalism.

Canada recently wrote into law that disability is, in and of itself, sufficient reason for a euthanasia death. Professor Em Etienne Vermeersch declaimed (Goethe Institute, November 13, 2013): Belgium's euthanasia law was written for disabled people, who quite rightly in in his view, would want to die: a transsexual deeply failed by family and ‘healthcare’, an anorexic woman sexually abused by her treating psychiatrist, a woman being treated for depression with medication known to bring suicidal ideation, deaf twins who found they were also becoming blind who were deeply afraid of being institutionalised? Now a young 24 year old woman who thinks euthanasia is a 'nice idea’, finds planning her own death and funeral 'fun' is granted a euthanasia death because 'life is not for her'. She formed this idea after a friend committed suicide eighteen months ago. All of them would absolutely qualify for protection under disability discrimination law in the UK. What they are getting is a false positive: 'of course we understand. Yes, we have the solution for you at the end of a syringe.’

Your article denies a stark reality.

Assisted dying (why ‘soften’ the language? Assisted suicide and euthanasia should be legal everywhere on grounds on mental anguish is explicitly written into Belgium's 2002 euthanasia law. By this logic gay people, who are deeply distressed by the prejudice and discrimination they suffer, would qualify. Or black people, when so obviously persecuted, older people the evidence of whose abuse is almost daily, those of certain faiths or even shades of supposedly the same faith dying horribly on the shards of ideology.

Disabled people understand discrimination in all its forms and subtleties, from direct experience. In a secular world. To diminish us, our well-researched, well-formed views to that of Stephen Hawking who represents not one disabled person's organisation anywhere, is facile, and the clearest example of the lazy moral thinking that infects this piece, to our great disappointment. With your high-standing and reputation comes a high level of responsibility; it is deeply betrayed here.

We have long argued that pain is not the primary nor even the biggest reason people want to die. Even Lord Falconer, promoter of legislation in the British House of Lords, has admitted this now.: ‘…pain…can be dealt with…it is the sense of people losing independence and being reliant on other people…there’s a small number of people who…find that an intolerable position...’ Yes, 61% of people in Washington State US say they want to die because they feel themselves ‘to be a burden on others’ (Daily Mail 11 June 2014). No small number that.

Even amongst the most worrying of your discussion contributors knows this:

Perrodin posted:

‘It is not always about pain. It is also about being decrepit, disabled, incapable of taking care of oneself anymore, getting blind, getting incontinent, becoming an object of disgust and pity for those in charge of cleaning you up and feeding you. Who wants to go through all that when there is an easy way out?’

There it is: all of it. Becoming an object of disgust and pity for others, being 'decrepit, disabled’ - and when the 'easy way out’ is to hand.

Your article wrapped us all up in anti-religious sanctity of life. Such assumption. There are as many atheist, agnostic, believing disabled people as in any population. We are not a homogenous whole. Ours is not a religious argument in any way. Ours is the evidence of rank disability discrimination - to death.

What happens to people with disabilities when you legalise euthanasia and assisted suicide?

Andy R responded to Kevin Fitzpatrick's article: Assisted suicide for disabled people - democracy in Britain? The comments by Andy R are published below his article. This article is Kevin's response to Andy R.

Kevin Fitzpatrick

Dr Kevin Fitzpatrick is the director of Hope Ireland.

I would ‘loathe me’ too if I ever pressured you or anyone else to stay alive for such a self-serving reason. I can’t actually see any reason or moment when I would contemplate pressuring someone this way, although I know that when people cannot bear even to imagine losing their beloved, they might allow themselves to go down that road, for love.

Supporting someone in the depth of despair is first and foremost to recognize that – at least some of them – are serious about wanting to die. And many with very good reason - precisely because the kind of support they need is absent. When we are faced with the conviction that there really is nothing left, nothing at all, no person, no event, no medication, nothing but the need to be gone, then speaking about choice (and autonomy) is empty. Empty because what gives life meaning depends on a grandchild’s birthday party, the best cup of coffee in town, the kindness of a smile, all the millions of things we count in a human life, most of all the love of others, the ones for whom we feel we must push the extra mile, the ones we love back.

That is no mere support. Giving it, watching our loved ones not getting enough of it, say in a clinical setting, or not having what feeds our human depths despite the best professional intentions, noticing and coming to fear that absence for ourselves – it is all the stuff of human despair, feeling alien in this world, dying.

The question is not whether you or I or anyone else wants ‘the option’ for surely we all do want a peaceful painless, swift and comfortable death? I would never deny you or anyone else this either. To be clear, I want it too.

The question is what happens when you legalise this as a process. There is nothing to stop anyone committing suicide now, and people do, in exactly the way you describe, but also in more horrific ways. Suicides, like all human deaths, matter.

The problem comes when you say to others ‘This is legal – so go ahead, no questions will be asked.’ The problem then is how do we know - older people, suggestible people, people made vulnerable by facing just the very thoughts you express – how do we know they really did not change their minds or were not so imbued with the idea by weeks months years of subtle pressure that they jumped willingly. Pressure is not one thing in human life.

Disability rights advocates fight California assisted suicide bill.

Anthony Orefice

By Alex Schadenberg

Executive Director - Euthanasia Prevention Coalition

USA Today published a very interesting article by Anna Gorman of Kaiser Health News concerning the role of disability rights activists in the assisted suicide debate in America. For instance Anthony Orefice from Valencia California who had a motorcycle accident when he was 19.

Anthony Orefice hit a telephone pole on his motorcycle going 100 miles per hour. Doctors told his family he wouldn't survive. He did, but the accident left him paralyzed from the chest down ... All you are thinking is the worst, worst, worst – everything you can't do," ... "I wanted to be dead. 

Orefice, who is now 40, is married, has a 7-year-old son, owns a medical supply company and counsels people who are newly disabled with spinal cord injuries. Orefice says that:

"Depression,... is part of the healing process." 

Marilyn Golden (on right)

Orefice is one of many disability rights activists who are speaking up against the California assisted suicide bill. He and others are concerned that:

depression and incorrect prognoses may lead people with serious disabilities to end their lives prematurely.

Marilyn Golden, the senior policy analyst at Disability Rights Education & Defense Fund, argues that the assisted suicide bill poses "considerable dangers" to people with new disabilities who may have suicidal thoughts. Golden states that:

"It would almost be too easy to make an irrevocable choice,"

Golden added:

many people who initially received terminal diagnoses have "lived full lives (for) years or even decades" longer than expected.

John Kelly

John Kelly, with the disability rights group Not Dead Yet, explained that the disability rights groups were less organized when the Oregon and Washington State and Vermont passed assisted suicide bills, but since then they have effectively defeated assisted suicide bills in many states including Massachusetts, Colorado and Connecticut. Kelly is quoted as saying:

"We have had success after success in stopping these bills," ... they are determined to defeat any bill, including the one in California.

The disability rights coalition is actively opposing the California assisted suicide bill SB 128. Deborah Doctor, a legislative advocate for Disability Rights California, wrote in a letter to State Senator Lois Wolk:

disabled people are vulnerable to abuse and could be coerced by family members not acting in the patients' best interests. Relatives, she said, could put pressure on people to take life-ending medication. 

"Our responsibility is to think of people who are the most vulnerable to coercion, abuse and pressure."

Doctor is also concerned that:

physicians may simply be wrong about how long someone has to live. Insurance companies also might overrule treatment for people with disabilities because of the cost of care.

Laurie Hoirup is another disability rights activist who strongly opposes assisted suicide, based on her personal experience. Hoirup has had spinal muscular atrophy since she was a toddler. She has a curved spine and rods in her back, she cannot eat, bathe or go to the bathroom on her own and has trouble breathing. According to Gorman, Hoirup said that:

Physicians told her family that she wouldn't live past 10 years old.

Anyone could be given the wrong diagnoses, I am certainly the perfect example of that.

Laurie Hoirup

Hoirup, who is now a grandmother, spent many years working in government and other positions on behalf of people with disabilities.

The article concludes:

Orefice, who wished for death when he was 19, said he is now glad for what he calls the years of "bonus time." 

But Orefice said he doesn't dwell on his disability or think much about death. Instead, he focuses on his family and thinks what he's been able to accomplish and what he still hopes to. He paddle boards, plays wheelchair hockey and races specially equipped off-road vehicles. 

"I have affected more lives than I would have if I was walking," he said. "When you are in the trenches, you don't see that."

• Marilyn Golden: What you don't know can kill you.
• John Kelly: Assisted suicide laws are more dangerous than people acknowledge.
• Diane Coleman: Why disability rights activists oppose assisted suicide.
• Stephen Mendolsohn: Assisted suicide would be fraught with problems and abuses.
• Dr Kevin Fitzpatrick: Debating assisted suicide: 'Contempt for life with disability surrounds us.'

Belgium: ‘Euthanasia leads to the decline of a society?

This article was published on the HOPE Ireland website.

Dr Kevin Fitzpatrick

Dr Kevin Fitzpatrick is the director of HOPE Ireland.

Hermann de Dijn, emeritus professor of philosophy at the Belgian University of Leuven, says: ‘Once the law is there, you have people asking themselves new questions… ‘Do I really have quality of life? Am I not a burden on others?’

De Dijn believes that ‘human dignity should include not only respect for personal choices but also for connectedness to loved ones and society.’ The concept of human dignity in Belgium has been ‘reduced to the ability to have certain experiences’.[1]

He is absolutely right of course. The concept has been stretched beyond its limits. It has lost all meaning in Belgium.

We must now, ever more urgently, return to clear ground, to be sure we are really speaking about dignity, not some corrupted notion which has no actual bearing on what should be our proper concerns.

If the questions are not exactly new, the locus of them is: Belgium’s veneration of death – the lazy moral thinking in a whole society which has allowed itself to be led on a leash to accept the idea that death is, and should be, the default ‘treatment’ for all ailments. This is the societal tectonic shift that allows a young woman, just 24 years old, with apparently serious mental health issues, to apply for and be granted a euthanasia death (believed to be scheduled for August this year), and to say she finds ‘euthanasia a nice idea’.

Assisted suicide for disabled people – democracy in Britain?

Dr Kevin Fitzpatrick OBE, Director of Hope Ireland, published on the Hope Ireland's blog.

Dr Kevin Fitzpatrick

Professor Raphael Cohen-Almagor’s recent research results[1] are extremely important.

As Baroness Helena Kennedy QC said in a public debate (Southbank, January 28 2012), ‘This is about the kind of society we want to live in’.

Cohen-Almagor’s paper reprises a truth Baroness Jane Campbell, founder of Not Dead Yet UK, has spent years trying to help people understand. We have clear evidence that assisted suicide/euthanasia laws are aimed primarily at disabled people. Lord Falconer has now openly admitted this on the Daily Politics show (BBC 9 June 2015).

Pain, we have repeatedly said, is not the primary reason for asking for assisted suicide. Falconer agrees: ‘…pain…can be dealt with…it is the sense of people losing independence and being reliant on other people…there’s a small number of people who…find that an intolerable position…’ Yes, 61% of people in Washington State US say they want to die because they feel themselves ‘to be a burden on others’.[2] No small number that.

Rob Marris, MP is now determined to bring forward in the House of Commons the Assisted Dying Bill. But this softened language is mere disguise according to page 39 of Lord Falconer’s own ‘commission’ report: ‘assisted dying’ just means ‘Assisted suicide/euthanasia’.[3]

Marris topped the ballot for a Private Member’s Bill. Falconer came twenty-first. Suddenly, Marris had adopted Falconer’s Bill as his own project. I cannot help but wonder how the other nineteen who came out of the hat before Falconer now feel. Is this really democracy in action? So that people may die if they fear the kind of ‘dependence’ millions of us disabled people accommodate every day?

Hope Ireland - new group opposing euthanasia & assisted suicide.

Thank you to Paul Russell for writing this article and publishing it on the Hope Australia website.

Dr Kevin Fitzpatrick

It was a great privilege to be invited to be present at the launch of the new organisation, HOPE Ireland and to speak at their inaugural conference in Dublin on the 6th of June.

Dr Kevin Fitzpatrick, director of HOPE Ireland, convened the conference in the wake of recent announcements that a bill will soon be tabled in the Dail (Parliament) in the nation's first attempt through the parliament at legalising assisted suicide.

Alex Schadenberg, head of the Euthanasia Prevention Coalition International opened the conference and set the scene with the troubling history of both euthanasia and assisted suicide in the few jurisdictions where these practices are approved in law.

Alex Schadenberg

William Binchy, Fellow Emeritus, School of Law at Trinity College Dublin outlined the current case law on euthanasia and assisted suicide and reflected on the challenges that these decisions pose to the protection and application of human rights.

Caroline Roux explained the current troubling developments in France including a dangerous decision in the European Court of Human Rights that endorsed a French Court's earlier decision to starve and dehydrate Vincent Lambert.

Henk Reitsema (Holland) and Tom Mortier (Belgium) outlined their personal and family distress at the euthanasia deaths of a family member while Henk also exposed the undercover killing of patients without consent occurring through the specious use of sedation and then dehydration to death in The Netherlands.

Amy Hasbrouck

Other speakers included Canadian disability activist, Amy Hasbrouck who laid out the historic reasons why people living with disabilities oppose euthanasia and assisted suicide, why her and her colleagues are in the frontline of opposition to such practices and why and how we should all work together in coalition.

Overall, the day was a tour de force and an exposition of the case against law change, drawing, as Kevin Fitzpatrick observed, on a deep reservoir of experience collected over many years of opposition.

From observing the assembled 100-plus attendees and in conversation it is very obvious that not only is HOPE Ireland answering a need to get organised and active, but that the expertise and ongoing support from international colleagues and from Kevin himself as director has raised people's confidence that the coming bill will be defeated and that the public understanding of the perils of euthanasia and assisted suicide will continue to be reinforced!

Well done to all!

Some of the media reporting on the conference:

• Group says legalising of euthanasia would have 'catastrophic consequences'.
• Euthanasia and assisted suicide could be discriminatory towards people with disabilities.
• Hope Ireland conference opposing euthanasia.

For more details and to supporrt HOPE Ireland go to the HOPE IRELAND website.

Hope Ireland: Assisted suicide and euthanasia could be discriminatory towards people with disabilities.

By Alex Schadenberg
International Chair - Euthanasia Prevention Coalition

HOPE Ireland - Saying No to Euthanasia & Assisted Suicide held its inaugural conference before a "full-house" at the RDS Centre in Dublin. Dr Kevin Fitzpatrick told RTE news that: 'legalising assisted suicide would have catastrophic consequences.'

Dr Kevin Fitzpatrick

Link to the video news report.
Listen to the interview on News Talk radio.

The RTE news reported that:

Director of the group, Kevin Fitzpatrick, warned that it was not possible to put enough safeguards into legislation to cover every aspect of human nature and human motivation. 

Dr Fitzpatrick, who is partially paralysed and who uses a wheelchair, said that assisted suicide and euthanasia were discriminatory against disabled people, arguing that while doctors would not hesitate to treat able-bodied people with suicidal ideation, the same was not always true for the disabled or those with other conditions. 

"Too many doctors look at someone like me, or someone with a progressive condition in a worse situation, and they say, "yeah, we can't blame you" [if you are feeling suicidal.]" Dr Fitzpatrick said. 

He went on to say that such a response was based solely on the persons disability, and, he said, that was where the discrimination came in, and that such discrimination "leads to death". 

Dr Fitzpatrick said that evidence showed that "once you open the door and legalise [euthanasia] things change dramatically," and that's what HOPE Ireland wants to prevent.

Conference speakers were from Ireland, Belgium, Netherlands, France, Australia including Alex Schadenberg and Amy Hasbrouck from Canada.

HOPE Ireland conference opposing euthanasia

On June 6th 2015 the inaugural Hope Ireland conference will take place in the RDS in Dublin. This free-to-attend conference will focus on how euthanasia laws are rooted in discrimination against disabled people of all ages and will highlight the terrible consequences of legalised euthanasia and assisted suicide in other countries.

Dr Kevin Fitzpatrick

Speaking in advance of the conference, Director of Hope Ireland Dr Kevin Fitzpatrick OBE said that the current law in Ireland protected vulnerable people and saved lives. ‘Those defences in law cover every citizen of Ireland and must be maintained, strengthened if possible, not overthrown.’

“We must look to the experience of other countries and states where we can see once euthanasia and/or assisted suicide is legalised those laws are very quickly extended to people who are not terminally ill at all, most often targeting vulnerable people. In Belgium one in twenty deaths are now deliberately caused. Euthanasia for children of any age is now legal. A Belgian government adviser stated publicly in 2013, their euthanasia law was drawn up specifically for disabled people who he believed were right to want to die. Now this includes considering euthanizing a man with bi-polar condition, and life-term prisoners who are fed up in jail.

Early this year Canada specifically legalised euthanasia even when the sole criterion was on the grounds of disability. Dr Fitzpatrick said that it was now impossible to deny euthanasia laws were rooted in discrimination against disabled people and were used to end the lives of people who were not terminally ill.

In the Netherlands some newborns are euthanised simply for being born with spina bifida and in 2013 42 people were euthanised even though they had mental health issues or a diagnosed psychiatric condition. In the US, Oregon is held up as a paragon but there too we shall show the terrible consequences of permitting third parties, doctors or not, to intervene in the end of any human life.”

“There are very good reasons why the disability rights movement is so opposed to such laws. We are the primary targets. In countries where laws enabling assisted suicide and euthanasia have been introduced, very quickly they are extended to end the lives of those who are not terminally ill, most of whom are, in fact, disabled people. The mere existence of such laws has become an invitation to see euthanasia as a form of ‘justifiable killing’.”

Dr Fitzpatrick said that most people who are offered the best end-of-life care turn away from their wish to die. This shows the vital importance of such care and support, and why it is essential that the current law needs to be protected supported and strengthened.

“In Ireland, as elsewhere, we should be proud of the hospice care movement, and our communities which offer such incredible support and proper end-of-life care. This is where end-of-life care truly prioritises dignity and respect while at the same time seeking to help people live as fully as possible. We must ensure that every possible health, social and human support is provided to those who need it. We perfectly understand why some people can fall into despair without that very best support. We think everyone should be striving to make the best end-of-life care available to every citizen of Ireland. The simple truth is: we can never legislate against mistakes, misguided help, exhaustion or financial pressures or even the cynicism that can enter every decision to end another human being’s life. But we must not allow that to happen and we certainly must not create the conditions in which it will happen more and more easily and routinely, by changing the law to permit it.”

Alex Schadenberg

The Hope Ireland Conference entitled ‘Saying No to euthanasia and assisted suicide” will take place on Sunday the 6th of June in the RDS conference hall from 9am – 4pm. Speakers at the conference will include:

Prof. Des O’Neill: Consultant Physician in geriatric medicine and Director of Centre for Ageing, Neuroscience and the Humanities, Dublin. (Keynote speaker)

Dr. Kevin Fitzpatrick: OBE Director of Hope Ireland, Director of Euthanasia Prevention Coalition International and a disabled activist.

William Binchy: Fellow Emeritus, Trinity College Dublin, Barrister at Law, former Commissioner, Irish Human Rights Commission, 2001- 2011

Alex Schadenberg : Executive Director and Chair of Euthanasia Prevention Coalition International. Other international speakers from Canada, France, Holland and Belgium.

Full details of the conference are available at www.hopeire.com.

Let’s have a big conversation on assisted suicide in Ireland – open, honest and balanced.

By Dr Kevin Fitzpatrick - Director of EPC - International and HOPE Ireland.

Dr Kevin Fitzpatrick

Brendan O’Connor has thought about Bernadette Forde’s death more deeply than most. (Ireland’s Sunday Independent May 3 2015), though his conclusions are still wrong.

Forde was failed, miserably. But not by the lack of a euthanasia/ assisted suicide law. That is still the wrong answer to the right questions.

For a ‘big conversation’ about the complex subject of euthanasia/assisted suicide to work, it must be open, honest and balanced at all turns, not just in rare articles by more intelligent journalists - who still go badly wrong.

O’Connor chose to reinforce the dreadful idea that ‘this, or any disabled life is not worth living’. The vast majority of people with multiple sclerosis do not commit suicide or even want to (never mind the rest of us disabled people). It is not just because Forde was battling multiple sclerosis that she fell into despair, enough to want to commit suicide. By all reports, she had no real nursing care let alone very good palliative care; and she was isolated from her family apart from one niece.

Disabled people are a minority amongst those who come to suicide. Tragically, it is mostly younger, non-disabled men who find themselves in what is surely the loneliest place on the planet. But when we can we try to help them, prevent the ultimate act of despair.

So again and again, why is our reaction to disabled people so different from when an otherwise ‘healthy’ person says ‘I am going to commit suicide’? The insidious notion that obviously a disabled life is not worth living is so, so dangerous and damaging. It is actually rank disability discrimination. And it is the other side of the terrible coin of treating disabled people as ‘useless mouths’. Look what cashing that coin led to in Germany. nd that is where the ‘big’ conversation needs to be honest.

Bernadette Forde deserved better. But the better she deserved was absent.

The rest of us, disabled people especially, also deserve better, but the easy acceptance that our disabled lives are not worth living is not it. Nor is the easy jump to the false notion that the only, right answer to suffering is to end the life of the sufferer, and to give all those involved legal immunity.

We all wish for the ‘velvet cushion death’ O’Connor describes - but we must not romanticise it. Not every relative gathered at every bedside is there out of pure love. Not everyone gets to have a home death – in our time, not even many do.

Dr Ira Byock

The ‘dying role’ is extremely important. I commend O’Connor for having read Ira Byock; would that more journalists took his lead. But our rituals are not merely some shallow attempt to comfort ourselves. The shallow idea is that we are more sophisticated in our time. That is the mistake Frazer famously made in the Golden Bough. Beware the ‘god’ of science. We do not become better people by developing more science. These rituals reflect something that can be described as the ‘majesty’ of death, its role in our lives. Today, we too often treat death as though it were like stepping off a bus. In a Kleenex generation everything is disposable.

To his credit, O’Connor speaks about some of these ‘higher-level’ concerns: how dying in our own clothes, at home, and done well, can be a profound and intimate death, for the loving living, maybe even for the person dying. That is where the majesty of death can lie.

Forde committed suicide. That she was left in such a state, where she came to believe suicide was her only option, is terrible. That is ‘our’ failure. Not that she should have committed suicide in a foreign death clinic at ten grand a pop, or that a law, endangering so many others to death should be absent.

Level-headed assisted suicide debate based on real evidence, not misplaced emotion.

By Dr Kevin Fitzpatrick - Director of EPC - International and HOPE Ireland.

Dr Kevin Fitzpatrick

Emer O’Kelly writes emotionally in the Irish Sunday Independent about Marie Fleming.

Marie was my friend and colleague in Swansea University for several years. At times we ‘colluded’ – the Northern Irish Two against the world – in the nicest and fun way of course.

I had already been disabled for twenty years when we met. My catastrophic change to wheelchair user came in an instant, collateral damage in a war I had no hand in. We did not know Marie was to become a wheelchair user herself, through progressive multiple sclerosis.

I joined Not Dead Yet UK, a loose coalition of disabled people, at the request of its founder Baroness Jane Campbell, friend, fellow Disability Rights Commissioner, and herself a lifelong disabled activist. I had visited the idea of suicide myself seriously, so I was unsure how I felt about euthanasia/assisted suicide. I began researching. When I uncovered for myself what exactly is going on where the act of taking another’s life is legal, I was horrified.

I have since appeared in front of many highly emotionally-charged audiences, extremely hostile to my opposition to legalisation. I am not usually afforded the courtesy of time to explain my position, constantly shouted down by angry people, including supposedly impartial journalists.

What most audiences, and what Emer O’Kelly fails to understand is that opposition to legalising euthanasia/assisted suicide is not about some cruel desire to stand in Tom or Marie’s way.

Disabled people reflect the views of the people around them, just as much as a studio audience, for example. So it is understandable that some disabled people think they should be allowed to die by euthanasia or to have someone else assist them to commit suicide. I can respect this and understand their fears of a painful death or of not wishing to be a burden on others. But I can still oppose such legislation for reasons of its terrible consequences.

Euthanasia/assisted suicide is an act that affects not just the individuals involved. The threats and awful consequences arrive once any third party is legally allowed to enter into the end-of-life decisions of another human being, whether spouse or close family member, doctor or carer or total stranger. Why is reaction to disabled people saying I want to die so different from when a healthy person says ‘I am going to commit suicide’?

Irish Symposium: Saving Lives NOT Causing Deaths - Dublin - June 6, 2015.

RDS Center

Hope Ireland and the Euthanasia Prevention Coalition (EPC) - International have organized an International Conference on euthanasia and assisted suicide at the RDS Center in Dublin Ireland on June 6, 2015.

Everyone deserves justice, fairness - never more so than when they are facing death.

Speakers include: Alex Schadenberg (EPC - Canada), Paul Russell (HOPE - Australia), Henk Reitsma (Netherlands), Caroline Roux (France), Tom Mortier (Belgium), Amy Hasbrouck (Not Dead Yet - Canada), Dr. Kevin Fitzpatrick (Ireland) – others to be announced.

To register please go online to: www.hopeire.com or send your details to Dr Kevin Fitzpatrick by email at: kevin@hopeire.com or by calling: 00 353 (0)857474607.

Attendance is free for the one-day conference. 

The RDS building, chosen both for its location and its ease of access.

The venue can accommodate up to 120 people, so places are limited. Please sign up early. Registration is possible online, by phone or mail and, if places remain, on the day.

The law in Ireland protects dying people from fear, suggestion, coercion and abuse. Removing legal protections is dangerous and will quickly lead to people who are not terminally ill dying under these laws.

Hope Ireland is a new organisation to combat moves to legalise euthanasia/assisted suicide.

Send donations to:
Hope (Ireland)
120-121 Baggot Street Lower,
Dublin 2